sorry to return to you with more questions but can anyone please tell me of any skin problems with their fibro they suffer. I know some I have had a long time and can be down to fibro but others im not so sure.thankyou for being patient with my postings.
Raynauds, uticaria, livedo,dry patches that come and go in flares of symptoms then flake off-face, knees. little raised white lumps on arms and feet. indentations as you'd see if you had pitting oedema only they appear without touch, prominent veins, red shiny palms, hardening of knuckle skin on finger joints after chalky substance came out, small scaly patches, returning lesion on face that then scales and leaves expanding white mark, very red soles and little white bumps on heel, rashes that appear on red skin and resemble stinging nettle sting, intermittent bruising under eyes and facial swelling, blisters on elbows leaving dry hard skin scarring, sore patches small on head causing hair loss. red v on chest with white marks , big red rash with blood spots, little blisters on toes come and go, nails splitting vertically, mouth ulcers, dermatographic skin ,spots that are not like normal spots but dry and flake then go, sore redness around base of fingernails, weird white raised lines on feet, swelling of lip, blue line around top lip comes and goes, red rash over face and chin looking purple and dark coloured eyelids and erythromyalgia.
thankyou id be most happy to hear of skin complaints anyone suffers and sorry if you do 🤗
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stiff19
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I would not put any of these symptoms directly down to fibro. Some could be down to your erythromelalgia. Have you been checked for Psoriatic Arthritis?
I really cant explain the dire situation ive been in re my healthcare ive had so many suggestions and then bloods and tests they say no, ive had from beginning after palindromic ruled out rheumy testing for dermamyositis ,sarcoidosis ,lyme, lupus scleroderma and anything else 🤷♀️ after saying this is not right lets get to bottom of this to saying fibro. then myasthenia testing and told by neuro at hospital it can be zero to triple zero negative, locally had some testing saying no but still symptomatic to date. gp saying blistering elbows look like psoriasis but left at that , high heart rate just egg and fill in a form of when happens and bloods that again told ok. erythromyalgia was said by neurologist not local hospital but not flared when seeing dermy who said not but didnt see it.melkerson Rosenthal a consideration by same neurologist but everything wiped out by local hospital yet no answers either and say cant unify symptoms. I feel like I need to start over with a rheumy who has time to listen and see but that could only be private at cost, I have put in a complaint as 6 years of neglect from gp and hospital , not one treatment for anything or offer to see me and now steroids dampened not so obvious and im stuck in a vicious circle. only now am I to see an ophthalmologist after 6 years suffering and there is a 50 week wait and optician yesterday said he will write to gp to refer me to ophthalmology re ptosis and blue sclera as I shouldn't be living like this. Believe me ive tried to be seen and heard but ultimately and in heart of hearts I feel this has all been down to local hospital and id go as far to say colleagues are just backing each other up. 100 per cent something is not right with it all but leaving that aside and my complaint ongoing it is not answering my health and thats the bottom line. I have been made to feel like an idiot over the years but I have photographic evidence of my recurring problems but no one with time to look or listen. im told one thing when I was seen and all not mentioned on clinic letters back to gp and I mean they are VERY contadictory. and ommitting.The problem lies with clinical picture and not being seen and just blood tests which are always ok im told. bloods are not the answer for all and with clear bloods yet progressing symptoms you would think needs more attention than a blood miraculously giving an answer. I was told possibly rare so would be sent to Bristol hospital ,after two years and chasing I was told no it wasn't happening.Not seen in all that time either. Even IF all was fibro no one has done anything or offered anything and now total lack of trust in local healthcare I continue to care for myself but its just hard.
sorry that was longer than intended . I made a complaint after seeing rheumatologist who said he had examined hands at appointment, I never had such an examination, indeed he didnt move from the chair, from that day on my healthcare or lack of it(barring ent who tried to help somewhat) has been dreadful, I will leave at that but it speaks for itself thankyou 🙏
Hi stiff, you've got a lot on. I have excema (forgot how to spell it 🤣) on my scalp, which makes my scalp inflamed and itchy and I get small sores and hair loss. Excema in my ears and on my eyebrows, which are very thin.I have constant mouth ulcers and sores and I have the toenails splitting vertically thing going on. I think my skin problems are down to stress. I wonder how you can avoid stress with fibromyalgia. So while I don't think these are fibro symptoms I do think they are related.
Please see a different doctor in your practice stiff. You need to get your symptoms checked out properly and diagnosed and treated. I know it's a pain when you are ill but it's what you need and deserve. All the best xx 😘
thankyou yes I thinks some things can be attributed. I dont know how anyone avoids stress nowadays but I'm not stressed just angry, I learnt long ago to make sure im on top of any stress in fact im too laid back now 😂😂 but I know what you mean. yes I think I need a new practice or I just need to move 🤔
That's really great that you are on top of stress stiff. I'm happy to hear that as stress causes a lot of problems. I find severe pain stressful, in the sense that I tend to stiffen my muscles to cope with it. I get stressed with being sent to the hospital so often and the tests showing nothing and facing some horrible attitudes from doctors and other people who don't understand or necessarily believe, and judge and criticise me for trying to take care of the symptoms and when I can't do the same things they do, telling me I'm fat and lazy.
Sometimes I'm chilled but not when the pain is scary bad, or when I'm trying to cope with other people. I realise fibromyalgia is a hidden illness. Cruelly I, and other fibrowarriors, can look well at the time that we are feeling our worst.
I'm not surprised that you feel angry. You have a lot to feel angry about. With such a wide range of symptoms and your doctor basically letting you down and instead of trying to do something to help you, abandoning you to your own devices.
Maybe you have the right idea of changing your practice if that is an option for you. I really hope you find a doctor who believes that fibromyalgia is a real illness and who is more knowledgeable about it. One who is supportive of you and will do all they can to help you. You take care too stiff xx 🥰
yes pain and chronic pain is stressful as are doctors attitudes and neglect and people who have no idea but when already suffering this leads to more stress and ultimately poorer health so stress really has to be dealt with.Yes many illnesses are invisible and many of us hide things from others (Its easier and we try to protect loved ones from the truth) it is hell tough but if other people are cruel they're not worth it so dont lose sleep over them ,you know your truth and thats what counts, its hard but take enough of it and any energy spent on them is wasted energy and we need that.Ive been rock bottom but crawled my way up , you fight to stay there but its a fight worth having for the prize.I do hold grudges though 😂😂 well do I? I give 3 chances after that if it continues and im not treated better I strike off, life too short.
Before steroid use I had very bad facial swelling and brain fog weren't the word it was more than that, my daughter thinks I had some sort of seizures id blank out or rage. I had brain scan and told ok. after steroids (after 😡) I was given another brain scan and told same as previous no change. after steroids and not seen for two years. why not before steroids ,how on earth can they do that. I said I deal with my stress and I do but something has changed in me also, I have never been so calm I was a hot head. this worries me significantly especially with still some facial swelling and eye problems and forehead gone smooth one side and wrinkled the other. A charity advised I should be having mri with contrast too but none used so how given this how can you accept being told ok ,when nothings better , how can you be told anyway all ok yet walk away with same symptoms as before the test all be it a tad alleviated because of steroids. the system is failing us. That's why im angry and I make no apologies for it, that is just one instance ive had many.I accept fibro , my version ,but much is to be answered . when im told I have symptoms that are not fibro and cant be given the answers but am also not looked at or listened to or seen to try and make a diagnosis I cannot accept that they cant make a unifying diagnosis. Ive never even had a biopsy or anything regards all this in rheumatology, neurology or dermatology, yet I have had post menopausal bleeding ,sent for a scan and now because of results am to have a biopsy. Other departments are failing. I could write a book but the sad thing is, it's my life and my health.
it is a new health system since covid, a self help one I get that to a point, I dealt with fibro for over 15 years alone but when my health took a turn I had to look for help but it s gotten nowhere, no doctors believed in fibro when I was first diagnosed and I dont know if thats changed but pain is not my enemy as much as inflammation and weakness and other things, bowel and urinary incontince which eased with steroids but again why and eased not cured. I had one doc say sorry we dont have the answers (then look for them) and rheumy said we cant always find the answers unless we are looking for them, meaning I guess they dont know where to look but then send me somewhere where they might know. I had a doc scanning me say I can see how unwell you are ihope you find a doc who's interested. Im a nobody, lower class, a woman and I think health care is elitist when it boils down to going private for any chance of real knowledge and understanding. Also covid has left a lot to answer for.
apart from that the sun at least shone today, (I got some washing dry 👏👏)my fur baby made me smile and my daughter my unpaid carer and helper continues to support me, life could be worse (but it could also be a lot better.) keep calm and carry on they say 😂😂🤞🙏 . find the positives, it helps de stress.
Thankyou for your kind words and support , I hope one day my waffling will be more positive in results but subject matter is what angers me .Best wishes and we are warriors because we fight on and stay strong . 🤝🤗🙏x
I don't think you're waffling and I hope it helps to be able to safely express how you feel, here where you are listened to and supported. You are a strong fibrowarrior stiff and I think that anger is our power. I agree, we are warriors, we fight and we don't give up. We can be knocked down but we don't stay there!
As to my kind words, you are so welcome. I feel for you and for all the beautiful people on the forum who are suffering and trying to manage their symptoms in the face of lack of medical knowledge re fibromyalgia. Doctors have acknowledged that to you as my gp has to me. But it does make life easier being part of this group. You don't have to go through this alone. We have each other and that's such a gift. For which I am so grateful.
I am grateful for each precious one on here.
I find what has happened to you with menopausal bleeding and all of the other things you have pointed out profoundly shocking. It must be very disturbing to you experiencing the facial swelling, eye problems and change in the person that you were before.
There are so many questions that ought to be addressed. It's baffling to me that you aren't getting the help and attention that you need. I can only hope that you will find a doctor who will listen to you and help by referring you for the necessary investigations. There are some fine and caring doctors out there. Unfortunately you have not yet come across them. They are there in spite of all the pressures and restrictions they face and you will find one. Because you're not the type of person to give up.
I loved that you have your lovely fur baby who loves you very much and who made you smile today in spite of everything. They are therapists in fur coats ☺️ and your daughter sounds amazing. We have to savour and soak up all the little incidents in life that make it worth while and fill us with joy and laughter.
It's like Dizzy's posts that made me laugh and lifted my spirits. She wanted to do that and she is going through it at the moment. I respect that and everyone on here including yourself. Awesome.
I have the deep vertical ribs on my finger nails that split off and have to keep them cut right down like I bite my nails, which I never have…no vit/ min supplements seem to help,
its strange isn't it, I wonder if anything to worry about or an ageing thing 🤷♀️ I have had fibro diagnosis for many years but this has only in the past year or so been here and I have other things undiagnosed so 🤷♀️ ive tried many things or maybe its dietary 🤷♀️ yes thats what I do keep those nails short but it only happens to to two same fingers opposite sides that they split though ridges on all.
Snap, all finger nails have ridges but only same two fingers, first two, that break off down ridges…perhaps the rest will follow! I have lots of health ailments and some you never bother with re telling drs…mine are loss of smell ( 4 years since Long Covid) and nails…as minor problems compared to o collapsing in street. I remember many decades ago that drs asked to look at your hands when you went to see them…!
Very strange isn’t it , I lost taste but I’ve never had covid that I’m aware of. You are so right , clinical examinations on the whole in my experience seem extinct as well as looking at your hands. I can’t say I’ve ever enjoyed a physical exam but they are missed and much needed in my eyes. Docs just seem to rely on blood tests for everything and this is dangerous for many reasons. Anything different docs don’t seem interested unless it fits neatly in their boxes.sorry you have other things to deal with too I empathise 🤗
Hi Judith, I have read that vertical ridges on the nails is a sign of illness. I think that our illnesses leave their mark on our bodies in different ways. If you are concerned it might be a good idea to get them checked out. It may help your doctor to diagnose other potential issues. When the cause is dealt with then maybe your nails will return to a healthy state. With love and prayer, Elaine xx 😘🙏
Unfortunately as I said above the ridges seem minor compared to other much more major disabilitating illnesses… my Gp surgery has a notification up saying one symptom/ ailment per appointment , so it’s pretty low in my priorities! I have wondered whether it’s a sign of poor vits/ mins ( not ferritin, B12, vit D and folate which I test and supplement for re hypothyroidism) as I have no gallbladder and damaged pancreas which much limit my digestion / absorption!
My surgery has the same policy Judith. I usually book a double appointment as like you I have multiple illnesses. I write out my symptoms before I go and give them to my GP. That way it takes far less time.Just sending you warmest hugs today xx 🤗🤗
I'm so sorry to hear about everything you are suffering at the moment, I hope you get some respite and answers soon. I'm in the middle of a flare, especially mega pain in my legs - 2 hours sleep last night - 2 1/2 the night before, 2 hours when I went back to bed this morning, now I'm wide awake again! And along with the pain, I just about itch all over really don't know which is worse. I use Dermol cream as a soap substitute, but even that isn't helping. I also get little raised white spots on my arms (not sure they are Fibro related) haven't had them checked out as they don't bother me at all and eventually disappear for a while. I get split nails, not sure why, perhaps I should mention them to my GP next time I see him.
Hi, I have a few skin issues that seemed to appear quite suddenly and sadly my experience with current GP sounds similar to yourself.
After calling in one of his colleagues while I was standing in my undies for a second opinion, they both agreed I had a mix of psoriasis, excema and venous excema.
Lotions, potions and come back if it gets worse. Probably I'm in the wrong here as I haven't went back, I've pretty much had it with them!
I've got small pinhead blood spots all over my torso/breasts and this GP was telling me they were Age Spots! I'm female, in my 50's, I have fibro, neuropathy and CKD But I do still have a working BRAIN.
I have the vertical splitting nails (mainly thumb), shiny red sore skin around all the nails, extremely dry mouth, throat (affects my voice) nose & the dark coloured eye lids.
I have red rashes on inside of elbows, comes and goes (sometimes looks like a burn) small scabby bits on scalp but no hair loss.
They provide me with Naseptin for my nose, sprays for my mouth. Anything from a sore finger to toe - it's fibro 😩
Skin is a bit calmer right now, mainly on the top of my feet & one area on my elbow, couple on thighs. Constantly moisturise and I don't use their lotions & potions.
Red and hot shiny soles and hands too but always associated this with neuropathy. Apologies for the long reply 😊
totally understand how you feel, Yes exactly that our intelligence is often insulted and yes it doesn't seem to matter if linked to fibro or not ,but they say it is and its just as insulting and a cop out, worse its damning for our health. No apologies and believe me to what I can write its not long and just really shows our need and frustrations. You are doing better than me ive not been offered nothing, I cant decide if its the government telling them or nhs themselves but it is beyond belief that we just have no healthcare. I can go buy anything I need that they will prescribe for skin I spent years on tablets that did nothing yet back when hydroxychloroquine helped and the high dose steroids and they stop them. Yes I get the red hot and shiny souls too, I have trouble breathing , had tests and doc said he would pass on to rheumy and when I see her I will get a prescription to help with breathing, rheumy said no im not that worried its just a bit of asthma, yet my lip turns blue and there's nothing I can do about it, complaining falls on deaf ears and then I suspect you are seen as an awkward patient and compliant held against you with shoddy treatment.Sunny today and feel awful with more rashes coming up with only being outside 10 minutes and so it goes on. I dread every winter for what it brings but the summer for me is so much worse and its not even summer yet so dreading it.
well glad you got seen down to your undies, I get sat opposite in a chair fully clothed so how that is being seen 🤷♀️.so sorry you too have much to contend with and no faith in them as me but at least im glad they give you some treatments and answers I get we dont know 🤷♀️, truthfully I think because of missed diagnosis maybe they just dont want to say now after 6 years of my hell and no help or being seen.😡 At least we have each other here to support and learn from or we would go crazy I expect, I know I felt that way for years.
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